Patient’s family sues B.C. as nursing home keeps her alive against her wishes

Pamela Fayerman, Vancouver Sun08.07.2013

Margot Bentley, suffering from advanced-stage Alzheimer’s, is receiving end-of-life health care contrary to the wishes she stipulated in a living will. Bentley is pictured here before she entered a care home.

Katherine Hammond is fighting the provincial government so that her mother Margot Bentley’s living will is honoured.John Morstad
/ Postmedia News

Margot Bentley with her grandchildren, it was taken in 1988, 3 years before she wrote her Living Will. Family handout.

Margot Bentley, suffering from advanced-stage Alzheimer’s, is receiving end-of-life health care contrary to the wishes she stipulated in a living will. Bentley is pictured here before she entered a care home.

Related

The actions of Abbotsford nursing home staff who are spoon-feeding an 82-year-old Alzheimer’s patient — contrary to the wishes she expressed in her living will — constitute battery, a lawsuit by her daughter and husband alleges.

The lawsuit, filed Tuesday in B.C. Supreme Court against Fraser Health, the nursing home and the provincial government, is expected to be precedent-setting as it should clarify end-of-life rights of patients and the obligations of health providers.

The patient, Margaret (Margot) Bentley, is a former nurse and the daughter of Charles Tysoe, who was a B.C. Court of Appeal judge. She frequently reminded relatives and friends that she had executed the legal document, the suit states.

Katherine Hammond, Bentley’s daughter and co-plaintiff (with Bentley’s second husband John), said in an interview that her mother would have shunned the public spotlight and would never have wanted to become a right-to-die “test case.”

“I feel terrible that this part of her life has been made public, but on the other hand, my mom would want to see this issue addressed. So my hope is that we can move from a place of sadness to one of a lasting legacy,” Hammond said.

“End-of-life care directives are obviously in a grey zone if health providers are misinterpreting or misapplying laws. So yes, this will be precedent-setting,” she said, adding that she hopes the case is heard by the end of the year. Even if her mom dies, the family will still press on because of the importance of the issue.

“We don’t want others to have to go through what we’ve experienced. I feel like this involves many more people than just my mom,” said Hammond. Vancouver lawyer Kieran Bridge has accepted the case on a pro bono basis.

Spokespeople for the B.C. government and Fraser Health said late Tuesday they wouldn’t comment on the case since it’s now before the court. But previously, Fraser Health official Keith McBain said health care workers are “obligated to provide the necessities of life for patients ... that includes food and fluids.”

Fraser Health contends that patients can refuse feeding tubes but spoon feeding is different and does not fall into the category of heroic or extraordinary life-saving measures. When a spoon is tapped on Bentley’s lower lip, she often, but not always, opens her mouth to accept mashed food, and even opens her mouth at times for an empty spoon, an action her family maintains is nothing more than a reflex, akin to an infant rooting for a food source.

Bentley, who had worked at Vancouver General Hospital early in her nursing career, was diagnosed with Alzheimer’s in 1999 when she was only 68. Long before she got sick, she told those in her close circles that as a nurse, she “had seen what the advanced stages of Alzheimer’s and dementia are like and she wished to be allowed to die if she reached such a state,” the lawsuit says.

Bentley has been institutionalized since 2005 and has been in a “vegetative” state for at least three years.

In more than 100 pages, the lawsuit describes how messy the case has become: Fraser Health has even directed staff at Maplewood House to call police if relatives try to move Bentley from the premises, according to Hammond. Last month, Bentley’s doctor, Andrew Edelson, came across the directive while looking through her file. He used his camera phone to take a photograph of the document and shared the surprising information with the family; it forms part of the court file.

In the lawsuit filed on Bentley’s behalf, the plaintiffs are asking the court for a declaration that the feeding is akin to battery and that the facility is violating her rights under the Canadian Charter of Rights and Freedoms. The suit relies upon 18 other rules, regulations and statutes in a bid to prove that Bentley’s rights are being violated.

They’re asking the court to recognize Bentley’s 1991 “Statement of Wishes” as a valid and enforceable advance directive under the Health Care Consent Act. Advance directives are also known, in common parlance, as living wills.

In that signed document, witnessed by friends, Bentley specifically stated she didn’t want to be fed “nourishment or liquids” if she ever developed an incurable medical condition involving mental or physical disability and that she be allowed to die.

The facility staff initially agreed to permit cessation of nourishment in late 2011, and told Bentley’s family that her demise would occur one to two weeks after feeding stopped. But Hammond said in an interview that there was an abrupt reversal of that decision only days later. So in early 2012, the family requested Bentley be transferred to a palliative care facility just down the street that her doctor (Edelson) had found for her. But Fraser Health denied the transfer request.

Hammond, who was a nurse before she went into another career in health care, said she knows each day in B.C., health providers respect patients’ wishes if they want to die.

“I think this case is somewhat of an anomaly and I still don’t know why an unknown third party prevented us from enacting my mother’s wishes. We have had fairly amicable relations with the care home until recently, when we found out that we were perceived as a threat,” she said, referring to the police reference in the newly discovered document.

Hammond said she doesn’t visit her mom much anymore.

“This is a family tragedy. I said goodbye to my mom a long time ago because I found that while I would go to visit her to make me feel better, somehow, I would always feel worse after seeing her in a completely unresponsive state.”

Hammond said since the family’s plight was reported in the media in the early part of the summer, she’s heard a consistent message of support from many people.

Bridge said in an interview he’s baffled as to why Fraser Health and the nursing home are taking such positions.

“There are no legal statutes compelling them to ignore her wishes. It’s not for them to judge. And what they are doing, by force-feeding, is a battery.”

He said he’s aware the provincial government welcomes a court ruling on the matter.

“I do think that the government is purposely lying low on this, happy to let others intervene. But it shouldn’t have to be litigated in the courts or go all the way to the Supreme Court of Canada. The law is already clear that every adult capable of giving, or refusing consent to health care, has the right to consent or refuse, even if that results in death.”

A document filed in court and prepared by an ethicist who observed Bentley states that nursing home staff are worried they’d be found negligent if they discontinued feeding.

“The risk of feeding her is minimal whereas the risk of not doing so means that death will be imminent. This death would be viewed as premature and so would constitute harm to Mrs. Bentley,” stated Katherine Duthie, who was hired by Fraser Health to do an independent ethics consultation late last year.

Another assessment, done in March by social worker Deborah O’Connor, found that while Bentley is completely unresponsive and totally dependent on health providers, she does have one way of communicating. She often closes her mouth to main course foods, but she opens it for sweet desserts.

Comments

We encourage all readers to share their views on our articles and blog posts. We are committed to maintaining a lively but civil forum for discussion, so we ask you to avoid personal attacks, and please keep your comments relevant and respectful. If you encounter a comment that is abusive, click the "X" in the upper right corner of the comment box to report spam or abuse. We are using Facebook commenting. Visit our FAQ page for more information.

Share

Patient’s family sues B.C. as nursing home keeps her alive against her wishes

Video

Today's Headline Videos

Best of Postmedia

To steel himself for the year-long journey that began Wednesday, Jonathan Pitre has been going over the hard calculus that underpins his decision to pursue a high-risk, high-reward treatment in Minnesota

When he woke up in tears the morning after he had cried himself to sleep, Rohit Saxena knew what he had to do. Leaving his wife, Lesley, asleep in bed, Rohit went downstairs, opened his laptop and began to write. “They say your kids are your hearts outside your body,” he wrote. “I’ll always be […]

Almost Done!

Postmedia wants to improve your reading experience as well as share the best deals and promotions from our advertisers with you. The information below will be used to optimize the content and make ads across the network more relevant to you. You can always change the information you share with us by editing your profile.

By clicking "Create Account", I hearby grant permission to Postmedia to use my account information to create my account.

I also accept and agree to be bound by Postmedia's Terms and Conditions with respect to my use of the Site and I have read and understand Postmedia's Privacy Statement. I consent to the collection, use, maintenance, and disclosure of my information in accordance with the Postmedia's Privacy Policy.

Postmedia wants to improve your reading experience as well as share the best deals and promotions from our advertisers with you. The information below will be used to optimize the content and make ads across the network more relevant to you. You can always change the information you share with us by editing your profile.

By clicking "Create Account", I hearby grant permission to Postmedia to use my account information to create my account.

I also accept and agree to be bound by Postmedia's Terms and Conditions with respect to my use of the Site and I have read and understand Postmedia's Privacy Statement. I consent to the collection, use, maintenance, and disclosure of my information in accordance with the Postmedia's Privacy Policy.